Appellate Judges Veer Off on Procedure Questions

Anticipation rose for months, as proceedings before the U.S., Court of Appeals progressed. May 8, 2003, the day before the hearing, reporters gathered at Compassion's offices to hear stories from two Compassion patients and a physician.

Early the next morning the crowded courtroom buzzed with excitement, but it fell silent as the judges filed in. Judge Tallman, a 49 year-old Clinton appointee, took the chair in the middle, as presiding judge. Judge Wallace, a 75 year-old Nixon appointee and former Chief Judge of the Circuit, sat on his left. Judge Lay, appointed in 1966 by President Johnson, showed his 77 years as he walked slowly to the chair on the right.

Shortly after Jeffrey Katsas, Ashcroft's deputy, began, Judge Wallace revealed his acerbic mood with a harsh word to the press photographer. But it was Tallman who badgered Katsas with questions. Isn't the federal Controlled Substances Act concerned with drug dealing, not medical practice? Aren't doctors legitimately concerned that if that law applies to end-of-life care they will be scrutinized for providing aggressive pain care? Didn't Glucksberg (Compassion's 1997 Supreme Court case) indicate that dying patients have a right to aggressive pain care? Isn't the Attorney General walking too fine a line between pain care and assisted dying?

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All the judges questioned Mr. Katsas about judicial deference to an about-face from the previous Administration's reading of the law. Should a court be deferential to erratic legal interpretation by an administrative agency?

For our side, the questions were not so vigorous, but surprisingly, they focussed on jurisdictional issues. Was this case properly filed in the District Court? Should it have come directly to the Appellate Court? Is the case ripe? Without enforcement of the Ashcroft Directive has anyone really been harmed?

Nicolas van Aelstyn, representing Compassion patients, quickly put to rest the notion that Ashcroft's Directive harms no one until a physician is prosecuted. We began this litigation with nine patients. We now have two. The questions before the court are pressing to our clients. They would suffer immediate harm if the injunction were lifted and the Ashcroft Directive went into effect.

Judge Tallman seemed most sympathetic to the ruling of the District Court, favorable to our side. Judge Lay seemed most interested in dismissing the case, only to have it begin again in the very court now hearing it. And Judge Wallace seemed persuaded by right-to-life arguments advanced by an Amicus brief on Ashcroft's side.

At this writing, we have no word of a decision or when one might emerge. We remain ready to respond with quick action if this court rules against us. If we win, we'll join our clients in celebration and prepare to respond to Ashcroft's next move.

Medical Study Confirms Patients' Independence

A new medical study confirms what Compassion has known for years. Patients who request aid-in-dying are fiercely independent. The study published in the Journal of Palliative Medicine, concludes "being in control and not dependent on other people is the most important thing for patients in their dying days." Dr. Linda Ganzini, Professor of Psychiatry at Oregon Health & Science University, surveyed 35 doctors on their perceptions of patients requesting life-ending prescriptions.

The physicians describe patients as having "strong and vivid personalities characterized by determination." Other adjectives used were "engaging," "passionate" and "crusty." With regard to their communication style patients were described as "outspoken," "articulate" and "forthright." The physicians' biases were also apparent in this study. Doctors who found their patients challenging used pejoratives such as "queen bee," "patriarch" or "odd duck."

Since the first use of the Oregon aid-in-dying law in 1997, opponents have speculated that patients choose aid-in-dying for depression, undertreated pain and financial concerns. The Ganzini Study refutes those arguments again by concluding, "loss of autonomy, loss of control of bodily functions are the primary motivators."

Compassion's Seattle founders developed and published a Medical Model of aid-in-dying in 1993. Compassion's careful practice built a solid foundation for implementing the Oregon law. Anyone familiar with Compassion's 10-year experience could have predicted the findings of the Ganzini study. Our own data reveals clients with extraordinary strength of character and independence.

News Notes

4/1The Journal of Law, Medicine & Ethics "Achieving the Right Balance in Oversight" acknowledges Compassion for "trying to counter the chilling effect of sanctions for opioid prescribing by drawing attention to cases in which pain was undertreated. The article credits Compassion's impact litigation in the Bergman case as "a dramatic message to physicians."

4/1Human Rights "End-of-Life Care: A Human Rights Issue" by Kathryn Tucker. The American Bar Association publishes Tucker's treatise which concludes, "If the dying process is intolerable then legal access to a lethal dose of self-administered medication is a matter of human rights."

5/1The Reader Digest "To Live or To Die ... An Oregon lawsuit has implications for us all." by Mary Fischer. Compassion patient Jim Romney's final interview inspired four terminally ill Readers Digest readers to contact Compassion. All are receiving counseling on their end-of-life options.

5/7MSJAMA Medial Student Journal of American Medical Association publishes four "think piece" articles on the legal, moral, political and ethical issues of physician-assisted dying. In an online poll readers vote 46% in favor of legalization, 37% opposed 11% uncertain and 7% maybe.

7/1 The Yoga Journal, "Compassionate Dying" by Judith Lassiter explores the yogic perspective on awareness at death. She compares the safeguards of the Oregon law with the teachings of yoga that "can guide us as we grapple with decisions to make when we or our loved ones are dying."

Northern California
New Board Member
The CIDNCA board welcomes new member Barbara Hofeditz, a professional photographer and graphic designer.

The board will host a public program and fundraiser October 9 in San Francisco.

New York
Conference Workshop
CIDNY staff and volunteers attended and exhibited materials at the Hospice & Palliative Care Association Conference in Albany. Executive Director David Leven presented a workshop on Oregon's assisted dying law, 5th Year report and Oregon vs. Ashcroft. An audience of 60 hospice nurses, social workers and administrators attended the presentation.

Film: "The Event"
by director Thom Fitzgerald
CIDNY Board and Staff attended the Tribeca Film Festival screening of a new film about hastened death. The movie stars Compassion Advisory Board member Olympia Dukakis in a brave and moving role as the mother of a young man dying from AIDS. After the film, Compassion distributed brochures to the audience to promote a dialogue on assisted dying.

On the Airwaves
David Leven appeared on a syndicated television talk show for the Regional News Network (RNN). David defended Compassion's case against Attorney General Ashcroft and explained the impact on pain care in New York.

New Staff
Ellen Schneier, a nurse, educator, patient advocate and cancer survivor recently came on board as the Director of Education, Outreach and Patient Support.

Oregon
Higher Education
Educational Outreach Programs were presented at Concordia College, Portland State University and the Annual Gerontology Conference at Oregon State University in Corvallis. So far this year, CIDO has spoken to over 200 higher education students.

Come Celebrate
Compassion In Dying of Oregon's 6th Anniversary Dinner and Book Launch of Compassion In Dying: Stories of Dignity & Choice is October 23 in Portland. To volunteer please contact CIDO at 503-525-1956 or email them at or@compassionindying.org.

Southern California
New Publication
The premier issue of CIDSCA's newsletter, The Compassionate Caller, along with copies of the End of Life Resource Directories for Orange and Los Angeles County, were mailed in June.

Celebration!
Preparations are in full swing for CIDWA 10th Anniversary Commemoration. A dinner honoring our founders will be held October 24th in Seattle. Call if you have questions or are interested in volunteering.

4/10 Federation of State Medical Boards, Annual Meeting, Chicago, IL presents Kathryn Tucker in a Fred Friendly Seminar "Facing Fears: Pain, Medication and End of Life Care, in Socratic Dialogue." The moderator, Harvard Law Professor Arthur Miller, uses Compassion's under-treated pain case as a hypothetical scenario for an informative panel discussion on pain management. The series will air on Public Broadcasting Stations this fall. www.fredfriendly.org

5/03 Wolfson Center for National Affairs at The New School "Assisted Dying: Analysis of a Social Movement" with Professor Sylvia Law and Rev. Paul Smith.

Bon Voyage Kim

Everyone who called Compassion came to know Kim Maine's kind, lilting voice. It was the first contact for everyone from frightened patients to irascible journalists and it defined Compassion's attitude of caring.

Kim joined Compassion in 1996 when it was a small Seattle nonprofit. She helped plan for formation of the Federation and came to Portland to set up its office. At first she did/was everything. Only gradually did she shed duties as we added staff. When a nurse joined the staff, Kim could now hand off patient calls. When we added a media specialist Kim no longer wrote press releases and organized press conferences. And so it went, with Kim forging the way, figuring it out, whatever it was, and making it easier for those who came later. Kim built and ran Compassion's administrative functions with the highest standards of efficiency and integrity. We'll always be grateful for the foundation she laid.

New horizons beckoned, and Kim recently left Compassion to join the Foreign Service. She hopes to return to Uzbekestan, where she enjoyed her years of Peace Corp duty. Kim will always be part of Compassion, even as we bid her a safe and happy journey away from us.

A Community of Giving

Compassion's mission to improve care and expand choice at the end of life requires a strong financial base. We provide free client services to the terminally ill nationwide. We pursue legal reform through the courts and legislatures and leverage each contribution with a million dollars in pro-bono legal fees each year. The costs are still substantial. As plans for high impact litigation, reform legislation, and community service increase, so does the need for resources to bring these plans to fruition.

Thus, Compassion is launching a Future's Committee to increase awareness of end-of-life issues in philanthropic circles. The committee will develop relationships with patrons who seek to bring hope and dignity into the lives of terminally ill people and their families.

The Compassion Futures Committee will include individuals throughout the nation who bring new friends and help us transform goodwill and good works into charitable gifts. The efforts of Futures Committee members will be crucial to achieve our goals of service and the transformation of dying in America. Those who are not able to serve on the committee are welcomed as advisors.

A distinguished group of people is already beginning this work. Three outstanding supporters from the Washington, D.C. area have stepped forward to launch this effort.

Mrs. Alexander Trowbridge (Ellie) is a distinguished volunteer with impressive achievements and alliances. Ellie has served on numerous corporate and non-profit boards including current board membership at The National Archive. She is on the board of the Phoebe R. Berman Bioethics Institute of Johns Hopkins University. Her understanding of Compassion comes from her daughter's battle with breast cancer.

Jerri Shaw is a partner in a prestigious Washington consulting firm specializing in health care policy. Her firm, with 200 employees and twenty-six million dollar annual revenue, was recognized in Working Woman Magazine as one of the 500 largest women-owned firms. Jerri's sister Karen L. Pye is on the Compassion's board of directors. Jerri's father, the Reverend Rodney Shaw, will also add his vision and expertise to the Futures Committee. Rev. Shaw is a retired Methodist minister and fundraiser for charitable causes. The family became close to Compassion during the struggle of Rodney's wife, Mary, with a terminal neuromuscular illness.

This fall, Jerri, Rodney, and Ellie will join forces to host a social event in Compassion's honor in Washington. This will be just the beginning of a series of events designed to spread the message of Compassion, bringing hope to terminally ill people and their families.

If you would like to share your ideas or are interested in participating in the growth of Compassion's Futures Committee, please contact Gail Meredith gail@compassionindying.org at 503-226-9551.

New Staff

Heather Bissel joins Compassion as our new Office Manager after volunteering with the organization for six months. She earned a degree in philosophy from Oberlin College and obtained a J.D. and Health Law Certificate from the University of Pittsburgh School of Law. Heather interned for Professor Alan Meisel JD, a prominent Bioethecist specializing in right-to-die issues. She is a member of the Oregon State Bar.

Gail Merdith, Development Associate comes to Compassion to enhance major donor outreach and cultivate a community of giving. She is a former president of the board of Planned Parenthood of the Columbia Willamette. Gail has led development activities for many Oregon non-profits including the Portland Audubon Society and the Columbia River Keeper. She graduated from Northwestern University's Medill School of Journalism and is the mother of two Cairn terriers.

Compassion Remembers

by Claire Simons, Director of Communcations

Jim Romney

Jim, a 56 year-old high school principal with amyotrophic lateral sclerosis (ALS) called Compassion in September 2001. Jim told us that shortly after his diagnosis he began researching his end-of-life options, because he did not want to be trapped in a deteriorating body. Compassion began its usual consultation process, not knowing the important role Jim would play.

One month later as we prepared our defense against Attorney General John Ashcroft and Jim called again. He volunteered to become the second patient-plaintiff in Oregon v. Ashcroft. In his declaration Jim stated, "I do not intend to live my final days without control over my daily life." In his first press interview, Jim told a New York Times reporter, "I was devastated, totally shocked by Ashcroft's announcement. It took away all my sense of liberty." So began Jim Romney's role as a Compassion spokesperson.

It is my responsibility to evaluate inquires from journalists. I told reporters Jim was a "philosopher-king" from a Mormon-Republican lineage, including former Michigan Governor George Romney and Massachusetts Governor Mitt Romney. Although Jim voted for Senator Gordon Smith, a moral conservative, he adamantly believed in choice. Jim told his family, "My God would not want me to suffer." Journalists are not easily impressed, but Jim's candor facing death and his passionate beliefs captivated them. Jim understood that every interview he gave could be his last. So did the journalists. Jim mesmerized reporters with his gracious demeanor, intelligence and wit.

Jim accompanied Compassion's legal team to court and heard attorneys from the Department of Justice attack our law and Jim's right to use it. After enduring hours of argument, Jim stood with us on the courthouse steps. His ALS was progressing so it was difficult for him to speak or stand. Surrounded by microphones and cameras Jim told the world, "I want to know I can die when I choose." This photo commemorates that day. It is my favorite photo of Jim because it shows his strength and determination.

On April 17, 2002 a federal judge ruled against Ashcroft and Jim joined our victory press conference. He told reporters "Today I feel liberated again!" A year later, Compassion was back in court responding to Ashcroft's appeal. The stakes were higher and Jim knew it.

On May 7th, Jim emailed Barbara Coombs Lee with his encouragement to "stand tall in the Ashcroft litigation." Once again the reporters clamored around us on the courthouse steps. Jim was too weak to be there but I knew he was with us in spirit, standing tall to protect the rights of our patients. On May 13, Jim died from a pulmonary embolism. His wife Kathy was at his side. At his memorial friends, colleagues and relatives told how Jim "stood up for what he believed." Jim stood up for the rights of Oregonians when we needed him. He stood for choice and dignity at death. May we all "stand tall" in memory of Jim Romney.

On My Mind

by Barbara Coombs Lee, Compassion in Dying President

My husband and I like to walk and our vacations often include hiking cross-country footpaths. If we're in England, we're apt to spend time in London as well. We plan very little, so after a week on the Cornish Coast I was surprised to find myself in London by pure luck on June 6th, when the House of Lords took up HL Bill 37, an assisted dying bill. Some quick phone calls brought an invitation from Lord Joffe, the bill's sponsor, to watch the entire debate, meaning we could avoid tourist status and the long line outside Parliament.

What a show! To reach the gallery we followed aging, tuxedoed pages through grand salons and up winding, ornate staircases. Our view from high in the chamber included the lavish dais and gold throne, the Lord Chancellor with his long white wig and ceremonial woolsack, and designated benches for each party plus the Bishops. Lord Joffe sat in the Crossbench section. I settled in for 6 hours of uninterrupted speeches.

Support for the bill was strong, with 21 Lords speaking in favor and 27 speaking against, by my count. Speakers aired many of the same arguments we hear in the United States. Supporters spoke of the need to honor individual beliefs and values and the danger and injustice of current underground practices. Opponents theorized about an adverse impact on the physician/patient relationship and a prevalence of abuse.

I came away more convinced than ever of the enormous value of Oregon's experience and evidence. Our opponents argue only their own beliefs and presumptions. They fail utterly when they try to use Oregon data to support their fears. Lord McColl, a physician, summed up the position of the Conservative Party with a story he claimed came from Oregon. He told a complete falsehood about a woman being "euthanized" (which, of course, would be illegal in Oregon) who on autopsy was found to have been without cancer. After the session I was able to introduce myself to Lord McColl, suggest his story was untrue and challenge him to reveal the name of the patient and hospital he had cited. I confess I don't expect a response.

The true Oregon story is enormously important. This issue of Connections includes news on the latest study by Dr. Linda Ganzini. It brings credible data to the medical literature about the character and values of patients who request aid-in-dying. We all benefit from such carefully designed studies and accurate information from Oregon. They comprise the hard evidence to support our position in courtrooms and legislatures throughout the nation.

Compassion Publishes Book

In an effort to put a human face on the end-of-life debate, Compassion in Dying and NewSage Press are publishing a book, Compassion in Dying: Stories of Dignity and Choice.

"These rich stories reveal the complexities of end-of-life issues and the human need to affirm deeply held values. By sharing these stories we hope to help others confronting similar situations and help society understand how the issues of a debate play out in the lives of people who might be their neighbors, their friend, their role models," states Barbara Coombs Lee on the book's cover.

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